The Hug

Last night, when it was clear to my husband and me that trump was going to be our next president, we decided to call it a night and head to bed.  Just before ascending the stairs, we stopped and hugged.  It wasn't the usual "I love you, good night" hug, but rather a long, strong, and heavy hug.  

The last time we shared a hug like that was the night we were told I have metastatic cancer.  And the time before that was the day my mother-in-law came to our home to enter into hospice care for the last two weeks of her life.  

These are rare and distinct hugs with a very specific, unspoken message.  Through each of these hugs, Wynn and I told each other that whatever uncertainty lies ahead of us, we will be together.  Whatever challenges are in our future, we will be together, and while we are both strong individuals, together we are stronger.  

Hug the ones you love...a long, strong and heavy hug.  And remind each other that together you will make sure it's going to be OK.  

Fall 2016 Update

     It's been nearly 3 months since my last blog.  I've discovered that, like many things in my life, the longer I take to write a blog post, the harder it is for me to get it done.  I don't like using the "I've been so busy" excuse, but really...I've been so busy.  So I'm trying to catch up...

     In August, Wynn and I made a trip to Denver, CO for the CancerGRACE Lung Cancer Patient Forum for EGFR, ALK, and ROS1 driven disease.  Like other patient education sessions we have attended in the past, we learned so much. The most meaningful information I heard is that there are now 7 new medications that are either in phase I or II clinical trials, or will soon be, that I may be able to try when Xalkori stops working for me. This news, literally, made me teary-eyed.  Since starting on Xalkori over 3 1/2 years ago, there has been no "next drug" for me to access.  I'm on the latest and greatest thing, and I have worried that my cancer will become resistant to it before there is something new to try.  Now I can worry less. 
 

ROS1-ers unite in Denver

     Although these drugs are, or will be, available through clinical trials, I have to remind myself that they will not be all available to me if, or when, I need them.  Clinical trials occur at specific medical centers and if a patient doesn't live near that center or does not have the resources to travel to that center, then that new drug is not available to them.  I am fortunate that I live near several large medical centers in and around the Chicagoland area, but it may be that the best clinical trial for me is not near my home.  

     The best part about attending patient forums is seeing my lung cancer buddies...and YES!...seeing them trumps the new information I got.  I first met many of these folks in Fall, 2013 at a CancerGRACE forum in Boston.  As I hugged Andy Trahan I said, "I want to cry I am so happy that we are all healthy enough to be here."  Andy's response, "Amen." - with his usual big, warm smile.

     In this group photo, those of us with lung cancer are holding up fingers indicating the number of years we have been thriving with lung cancer, (not just surviving with), since our diagnoses.  NOTE:  In the first row, second from the left is Linnea Olson - who doesn't have enough fingers to show us that she's been thriving for 11 years!  Her son, August, had to help out. 


    

 



     After the Patient Forum Wynn and I drove to Rocky Mountain National Park for a few days of R-and-R.  

        We got in two great hikes...

....and definitely want to go back.

My Cancer Head Game

Crocosmia from my garden

     Definition of "head game":  any deceptions or tricks designed to confuse or manipulate a person. 



     When one hears the words "head game" one usually thinks that these words are referring to a certain psychology of an issue - at least that's my take on the phrase. Recently, for me there's a double entredre to the term. Let me explain:

     I had a bit of a scare this past week...

     On Monday I had abdominal pain in the area around my liver.  I also experienced nausea after eating.  Although neither symptom was as intense as when I was first diagnosed, the pain was in the same part of my body and coupled with nausea, brought me back to the day I was diagnosed with metastatic lung cancer.  I was in daily contact with my oncologist over the past week, reporting to him how the symptoms seemed to be milder, but persistent.  Blood tumor markers, drawn earlier this month, were all within normal limits.  Unfortunately, these normal test results didn't relieve me of my worry.  On Friday, after four days of emailing with me, my oncologist ordered stat CT scans of my abdomen and pelvis.  

     I received the results as soon as I returned home from having the scans.  They indicate that my disease is still stable and there is no imaging explanation for my symptoms.  I was immediately relieved, and embarrassed.   

     The day after my scans and receiving reassuring results, I was exhausted.  I am relieved that Xalkori is still working well for me, but I have no idea why I didn't feel well.  However, I'm pretty certain my exhaustion came from worry.  In all likelihood, my symptoms were caused by some 'bug' or something unrelated to my cancer...and today, two days after reassuring scans, I am not feeling abdominal pain nor nausea.  Knowing myself, the symptoms have probably faded away because the recent CT scans are telling me that everything is still OK.

     As objective as I try to be about my disease and my symptoms, having cancer has made me hypersensitive to any and all unusual feelings I have.  I feel like I'm on the road to becoming a full-blown hypochondriac. Small things, like mild pain and nausea, turn into thoughts that my medicine has stopped working and my cancer is growing again. These sorts of false alarms are what make me feel like I'm living tentatively.  In my last blog I wrote about trying to move away from this burden by taking on a new, healthier attitude.  

     Well...in less than three months, I've come to realize that, although I want a new attitude, it is easier said than done.  I, by no means, feel defeated.  In fact I'm in the process of taking on some new professional challenges as part of my mission to stop living tentatively.  However, as with most things along this cancer journey of mine, I need to be deliberate, methodical, and patient.  

     The other thing that has happened since my last blog post is that I had a brain MRI in June as part of my every-six-months-MRI routine.  I am happy to report that, so far, there's no evidence that my cancer has spread to my brain.  A few of my fellow ROS1-mutation driven lung cancer friends, who are also on Xalkori, have had to have treatments for brain mets. The good news is that there are treatments, but the bad news is that I continue to wait for them to show up.  All the evidence tells me that it is not a question of if I will get them, but rather when. So far, Xalkori has been doing a great job keeping my cancer stable below my head, but from the beginning, I've known that I have mets in my cervical vertebrae - so the cancer is, literally, inches from my brain.  I often wonder what it will take for a rogue cancer cell to escape and make its way to my brain.


     So... back to the 'head game' double entendre I mentioned earlier.  Every-day, normal aches and pains deceive this otherwise level-headed and objective person with a chronic illness and can easily turn me into a hyper-anxious stage 4 lung cancer patient who is certain the disease is raging again in my body, leaving me to fall into the 98% of patients who do not survive 5 years from the time of diagnosis.  It's a major head game for me, so often leaving me feeling out of control and exhausted. 

     The other head game for me is to figure out if there are any other things I can do to prevent cancer cells from getting into my brain.  In all my reading, I haven't come across any recommendations or even cockamamie ideas for preventive measures I can try.  So...for now...I try not to jump around or hang upside-down too much.  It's my new head game - stay upright and steady. 

Again, please wish me luck.



P.S.  Here are some pictures from the last couple of months:

Way and Diana came to visit!

     Way and I go all the way back to grade school and along with Diana, we all graduated from Central High School in Omaha.  Way and I were the only Asian kids in our grade school, so we have a special friendship - which has weathered the test of time.

Lung cancer ninjas at ASCO

     Lung cancer patients get together whenever possible.  Last month a few of us met for dinner after a day of lectures at the ASCO meeting in Chicago.  (I didn't attend the lectures - just showed up for dinner.)

 



  

 
 

CT Scans #11 and a New Attitude

     It has now been three years and five months since I was diagnosed with stage 4 adenocarcinoma of the lung.  It has been three years and two months that I have been taking Xalkori, the oral chemotherapeutic agent that has kept me around this long.  I was taking Xalkori for three years prior to it being FDA approved for ROS1 mutation driven lung cancer.  On March 11, 2016, Xalkori was approved - which doesn't change much for me, but will make the medication more accessible to those whose insurance companies denied coverage for it because it wasn't approved.  

http://www.businesswire.com/news/home/20160311005839/en/XALKORI%C2%AE-crizotinib-Approved-U.S.-FDA-Treatment-Patients

California poppies...one of my favorites.

     The clinical trial for Xalkori use with ROS1-mutation driven lung cancer found, that for patients like me, the median "duration of response", (the time the medication worked before it stopped working), is 18.3 months. I had CT scans last Friday - and the good news continues...Xalkori is still keeping my cancer stable.  I sure as hell don't know why I am so lucky, but I've exceeded the median response duration by 200%, and I'm going for more.  
   
     More than being happy about my most recent CT scans, I am relieved.  Living with stage 4 cancer has left me living my life tentatively.  Dictionary.com  has the following definition for "tentative":
 

adjective

1.   of the nature of or made or done as a trial, experiment, or attempt; experimental:

a tentative report on her findings.

2.   unsure; uncertain; not definite or positive; hesitant:

a tentative smile on his face.

Moonlight Beach, California

     Both above definitions apply to how I feel. I suppose everyone's life is a trial, but when I didn't know I had cancer, I didn't think much about the gestalt of my life...I just lived.  I now, most definitely, feel like I'm living within an experiment. And...without a doubt, I am unsure, uncertain, not definite and hesitant about what lies ahead of me.  

     I hate this uncertainty.  It chips away at my self-confidence.  It makes me wonder which life milestones I will be around to celebrate with Wynn and my children, and which ones I will miss.  It takes away the courage I used to mustered that allowed me to take on new life adventures. 

Nathan got up on his board the first day!

     I realize what I need is a new attitude.  Xalkori has given me much more time than I ever thought I'd have.  As always, I should not overlook any opportunities, including this second chance to try new things. There is still uncertainty about what lies ahead of me, but I'm going to try to get out from behind this 'tentative living' crap, and look into some new adventure possibilities.  I have no idea what that will look like, but I'll keep you posted. 

Wish me luck!

(I wonder if I should have tried surfing?)

 

Thanks, Xalkori

     It's nearly impossible for me to believe it's already mid-April of 2016!  Since January, life has been a whirlwind of good and not-so-good things.  I've come to realize that whether it's good times or bad times, being busy is being busy.  Time escapes me.  
 
     Today has been a good...no...let me start again...Today has been a GREAT day, so I'm not going to whine about anything.  Springtime in Chicago is unpredictable - sunny and warm or cold and snowy, in the same day.  This spring has been predictably unpredictable, but today in Chicago was beautiful. Although it was a little windy on Michigan Avenue, it was sunny and the temperature was around 50 degrees.

     I got to do one of my favorite things today.  Wynn and I took our day off and made our way to the Art Institute to see a special exhibit:  

 

Van Gogh's Bedrooms   

 http://www.artic.edu/exhibition/van-goghs-bedrooms

 



 
     There were no sunflowers or starry night skies at this exhibit; but rather many other brightly painted still-life and landscape paintings, and drawings, we have never seen before.  It's an amazing show.  







     Vincent wrote to his brother, Theo, that he had no money to pay for models, so he painted things that were free.






 





     The three bedroom paintings are hung together so you can compare them.

     I love these shoes.  They are said to be his.

     This is one of his latter self-portraits.  He looks more gaunt here.  His (self-) injured ear is on the other side.  








 


     This is one of his last paintings before he died of a gun shot wound...probably self-inflicted.  It's said that the whole town came to say good-bye to him, even though the folks didn't know him well.  He was gentle and kind, despite his struggle with mental health illness. 

     If you've never been to the Art Institute in Chicago, put it on your bucket list.  Tripadvisor ranked it the "BEST MUSEUM IN THE WORLD, 2014."  The Van Gogh's Bedrooms exhibit will be here until May 10, 2016.  (Sadly, those coming to the American Society of Clinical Oncology meeting will miss it.) 

     I'm not sure everyone will understand how I feel about today.  I'm certain my fellow cancer survivors will.  I lived another day...long enough to go to the Art Institute another time...one of my favorite things to do.  Thank you, Xalkori. 

A Little Less Drama, please.

     All month, I've been trying to find time to write my next blog about how I've been doing, overall.  It was supposed to be my 3rd annual State of the Lunion Address.  Unfortunately, a few things have recently happened that have overridden that plan.

     Many of you know my mom.  She's 87 years old and nearly 20 years ago, following the unexpected death of my father, she moved to Illinois to be closer to us.  She bought a townhouse 5 blocks away from our house and when our children were young, she was incredible in helping Wynn and me care for them.  Through her 85th year, she was fiercely independent, strong and healthy.  Then in 2014, she had a stroke, and many things changed for her...and for me.  We found a wonderful caregiver, who stays with her Monday through Friday.  On the weekends, my mom would come and stay at our house, where we felt comfortable leaving her alone for a few hours at a time.  That schedule worked out really well...until earlier this month.

     One morning, a few weeks ago, my mom got out of bed and fainted from low blood pressure.  She hit her head - and ended up with a concussion and coup contrecoup injury, (a brain injury on the opposite side of the site of impact - because the brain moves on the inside of the skull.) She was in the hospital for a few days, then transferred to a nursing/rehab center. She's home now, but we've had to make changes to accommodate her new challenges.  For one, she now has a caregiver, in her home, 24/7.  After many conversations, she made it clear that she would like to live in her home for as long as possible.  No doubt, it would be easier for me if she moved into our house, but I don't have the heart to make her move at this time.  So, I told her I'd help her stay in her house as long as possible. Despite having grab bars installed in her home previously, she needs more assistive devices to help her be safe.  I try to stop in to see her at least once a day, and try to make it to her home for home health nursing and physical therapy appointments.  We are so fortunate to have warm and reliable caregivers for her.

     So this week, I was feeling a little better about my mom's situation.  We got her out of the nursing/rehab center, (which she hated), and back in her home.  I was getting all of her out-patient appointments lined up and found her a weekend caregiver.  It seemed like we were headed toward a good rhythm for her and I could put things on cruise control for a while.  

      But no....

      Wednesday night, after going out with work friends to celebrate a 60th birthday, I came home around 8:30 PM.  When I put up the garage door, I saw that Wynn's car wasn't there yet.  I went into our mudroom, as usual, and heard noises.  So I shouted, "Who's here!".  I heard more noises and quickly realized that someone was in the house.  I turned around and ran back into the garage and was headed to my next door neighbor's house...scared out of my mind.  As I reached the end of my garage I instinctively stopped, just as the burglar, who had run out the front door, crossed my path a few feet in front of me on the driveway.  He ran across my next door neighbor's front lawn, across the street, then disappeared into a townhouse neighborhood not far away...while I was shouting, "STOP YOU F*%#ING A$$HOLE!"  

      I called 911, and police cars drove past my house and into the townhouse neighborhood, while I stayed on the phone with the dispatcher.  Soon, three more squad cars showed up, including the canine patrol.  The three police officers and the police dog entered the house, guns drawn.  There was a lot of shouting warning any intruders to put their hands up or get bitten by the dog.  Two more police officers showed up and stayed outside with me and my next door neighbor, Jerry, as the other officers "cleared" the house. Many minutes later, the three officers, with the dog, emerged saying, "All clear."

     Jerry, the two officers and I went inside and found that the burglar had entered through our back door.  He had shattered the double-paned door glass with a brick, reached in, and let himself in.  A classic burglar move. 

      Then I turned, just as one of the officers said to me, "Do you have a dog?"  When I said, "No, not anymore", he pointed to a large pile of canine crap on the kitchen floor.  Then he asked, "Could there have been a dog here?" to which I answered, "Only yours."  If I wasn't so pumped with circulating adrenaline, I would have felt badly for the guy, who turned beet-red and was apologizing all over the place.  Seconds later, when I looked back, the officer had already cleaned up the mess. (Insult to injury, for sure.)
 
     The burglar got away with jewelry and cash.  He put them into a pillow case he took right off our bed...another classic burglar move.  

     The next day, we met with the police detective assigned to our case.  There are leads, including security video footage from a neighbor's camera.  Maybe the police will catch him one day.  For now, we are living with a plywood boarded-up back door...a lovely reminder.  

(PS:  Dear Mr. Burglar Asshole, I am thankful that you did not take my bottle of Xalkori. It's the medication that is keeping me alive. It was in the same drawer that you took some of my jewelry from.)        



(PPS:  Shouting obscenities at a fleeing burglar, momentarily, made me feel better.)